Senior Member

I'm not sure if we're talking about the same thing or not but I used to get a feeling of vibrating, or an inner tremor -- had it for years. Sometimes I felt like I would shake apart, even though to the observing eye, I was not shaking. It would often be accompanied with a numbness in hands, lower arms and face. I had it pretty much non-stop for years.

I've been slowly recovering (3 years and still not all the way there yet) and even during most of this better time period I have experienced the inner vibration. It's gone alot of the time now.

I'd say it's definitely a CFIDS thing, in my case at least.

Guesses as to cause -- messed up nervous system messaging -- like sending/ receiving static -- the equivalent (sort of) of vertigo in the ears, only this can be a widespread body experience. Other guesses -- messed up adrenaline and cortisol levels -- too much of one, not enough of the other, wrong one having to be used at the wrong times ... take your pick.

Another guess. Deep, profound, beyond the pale, exhaustion.

I don't know which of these -- if any -- are factors. Could be something else completely. I would take it as an indication that more rest, more often, is needed. I would look into any possible food sensitivities that might be making things worse -- when I went low carb, some of this stuff (not all of it) disappeared. So, low carb doesn't cure it for me but it keeps it from getting worse from eating stuff that my system can't handle.

All I can think of for now. Try not to let it get you too freaked out. As freaky as it is, it can be dealt with. As far as I know it's not dangerous. And it can go away, even if you've had a severe long bout with it as I did.

Senior Member

I'm not sure if we're talking about the same thing or not but I used to get a feeling of vibrating, or an inner tremor -- had it for years. Sometimes I felt like I would shake apart, even though to the observing eye, I was not shaking. It would often be accompanied with a numbness in hands, lower arms and face. I had it pretty much non-stop for years.

I've been slowly recovering (3 years and still not all the way there yet) and even during most of this better time period I have experienced the inner vibration. It's gone alot of the time now.

I'd say it's definitely a CFIDS thing, in my case at least.

Guesses as to cause -- messed up nervous system messaging -- like sending/ receiving static -- the equivalent (sort of) of vertigo in the ears, only this can be a widespread body experience. Other guesses -- messed up adrenaline and cortisol levels -- too much of one, not enough of the other, wrong one having to be used at the wrong times ... take your pick.

Another guess. Deep, profound, beyond the pale, exhaustion.

I don't know which of these -- if any -- are factors. Could be something else completely. I would take it as an indication that more rest, more often, is needed. I would look into any possible food sensitivities that might be making things worse -- when I went low carb, some of this stuff (not all of it) disappeared. So, low carb doesn't cure it for me but it keeps it from getting worse from eating stuff that my system can't handle.

All I can think of for now. Try not to let it get you too freaked out. As freaky as it is, it can be dealt with. As far as I know it's not dangerous. And it can go away, even if you've had a severe long bout with it as I did.

You are describing very well what I feel inside. It's as if I was shivering but from the inside. You mention that it could be some food sensitivities. This symptom started the same day (or the next morning?) I began taking a herbal tincture. I have been pretty sick from it.

It could also be the OVEREXHAUSTION. Too many appointments, this week. And now that I think about it - I had a dentist's appointment (a bit of frustration there) and an episode with the interior decorator (lots of deception).
The stress is gone and I will stop the herbal tincture. I will see if the tremors stop, too.

Senior Member

The only thing that "twitches" on my body is my lower right eyelid. It's pretty annoying. Over the years, a white patch (vitiligo-like) has appeared where the twitching is happening. I have a very dark circle under one eye and the other one looks like it has been "bleached".

The first time it happened was four years ago. I went to see an optometrist who said not to worry about it. However, this is how I found out that I was boderline anemic. The twitches are back... several years later.

I remember, years ago, I could see my stomach "moving" whenever I would take a bath (this was right after my son's birth) as if he were still in there. However, even though I could not explain it, I thought that it was related to the pregnancy.

Hmm. For me the hypoglycemic ones are internal, not visible from the outside. And they are whole body--like the very core is shaking hard
akin to being freezing--but it doesn't manifest outwardly. It just happened to me yesterday when I stayed on the phone too long, talking about something
mildly emotionally charged. The shaking went away when I ate something, but not the weird/wired aftermathy feeling of general --what is it? Discomfort? Or more like: used-up-ness.
As we talk here I'm starting to think the inner shakies and the hypoglycemia are both part and parcel of some aspect of a hyperreactive stress response. That one doesn't cause the other, but instead come together (along with other lovely things) when the system interprets some otherwise mundane situation as a threat.

Long ago I started noticing my blood sugar would plummet if I went to a big store. I avoid almost all shopping now, but if some odd necessity takes me to Target or some awful place, I've now noticed that if I stay 5 minutes over my "limit", I start to go hypo-g, I get the inner shakies, I can't make any decisions, I get lost, and if I don't exit right then the next step (sorry for TMI) is sudden-onset *urget* diarhhea. (Sorry again.) I must *run* to the icky public toilet and evacuate!! Ack!
I take this as my body givng ever-plainer messages:
"Warning! Warning! This place is toxic! Legal limits have been exceeded! Abort the mission! Repeat: Abort the Mission!"

Senior Member

The shaking went away when I ate something, but not the weird/wired aftermathy feeling of general --what is it? Discomfort? Or more like: used-up-ness.
As we talk here I'm starting to think the inner shakies and the hypoglycemia are both part and parcel of some aspect of a hyperreactive stress response. That one doesn't cause the other, but instead come together (along with other lovely things) when the system interprets some otherwise mundane situation as a threat.
-----
"Warning! Warning! This place is toxic! Legal limits have been exceeded! Abort the mission! Repeat: Abort the Mission!"

OMG! (double lol) I wouldn't want to be in your situation... not when I'm in a public place, for sure. :ashamed: (lol)

How long does it take for your symptoms to disappear (once you have eaten)?

At some point, it didn't matter what or how much I would eat, the hypo symptoms would not go away.
So, a few months ago, I started a very strict diet to see if it would help the IBS, the nausea, the headaches/earaches, the sore throat, etc. I was experiencing on a daily basis. The diet itself didn't help much, but it calmed a bit of the IBS down and the hypoglycemia had almost vanished!
When I started eating sugar again, it didn't take long for the shaking to come back. So, I cut back on the sugar again. This is when the "inner tremors" started.

Thank you for your story. You surely made me think! I know you don't think that one causes the other, but in my case could it be that my body is not having "acute flares" anymore (before - only certain parts of the body were targeted) but has decided to run on "cruise control" (now - all the cells in my body are suffering from hypoglycemia or from "used-up-ness" like you said)? It does feel like one has replaced the other... I know it sounds like science fiction, but nothing surprises me anymore... I truly believe ME/CFS is a disease of the fourth kind.

I had the internal vibration thing - felt like a really low note played on a real low musical instrument. Also sometimes like someone was tapping to get out ;-)
Turned out to be Bartonella and when I treated it went completely away. And yes, I'd get it much worse if I was exhausted or in a flare.

Senior Member

foggyfrog was this internal vibration throughout the whole body? the whole time I have been unwell I have a constant fluttering feeling in the chest. Its like adrenaline or anxiety but im not stressed or anxious. it just doesnt go away. I feel this is a big part of my health problems and if I could work out what this is and whats causing it, it would go a long way to giving me an answer. I just cant get a doc to do anything about it.

Senior Member

Internal Tremor also discussed on Parvovirus B19 forums
Thought you might be interested that a number of folks on one of the Parvovirus B19 forums discussed internal tremors too. Check out this link: http://www.medhelp.org/posts/Neurology/internal-tremor/show/293681 You need to scroll down through some irrelevant posts on that page to see them all.

What it's NOT - (I think)
Here's my hunch... I'm getting monthly IVIg, and develop internal tremor each time my Ig levels are at their lowest (i.e. the week before my monthly Rx). It's not a visible tremor at all - not like hypoglycemic tremor (which I also occasionally have), and as a (former) rehab med professional, I know the sensation of tremor is not happening in any typical dermatomes (areas of skin innervated by particular nerves); or myotomes (particular muscles). In other words, in my case I believe it is NOT a muscle tremor or phantom sensation.

My hypothesis: Internal Tremor = non-laminar flow and/or vibration/spasm of blood vessels
The tremor is more like a thrumming, and is DEEP, and longitudinal - just like blood vessels. Now here's where it gets interesting. I've tested positive on heart biopsy for antibodies against my endothelium - the inner lining of blood vessels. And my German cardiology team knows that I have coronary artery vasospasm - hence atypical angina. Think plumbing. When a pipe is clean, and water isn't flowing too quickly in it, you get what is called "laminar flow". Not a lot of turbulence, and the water flows well thru the pipe. (I know this cuz my spouse is a mech engineer). Now add obstructions in a blood vessel, such as inflammation of the endothelium, or circulatory vasospasm (a known phenomenon with PVB19, and indeed with some other viruses too), and you start getting turbulence in the blood vessels. I've had a couple of yrs now of Ig therapy, with multiple monthly IV treatments... many many opportunities to recognize that there is a vasculitic pattern that marches in lock-step with my Ig levels. When my levels are lowest, I get angina and Raynaud's-like stabbing pains in my fingertips. Ice-cold feet. Inflamed vessels in my eyes. Exacerbation of my stroke symptoms (eg. increased facial droop on one side). Etc. After my monthly IVIg the internal tremor disappears within a day, and I'm typically tremor-free for 3 weeks. Then it comes back... I get my monthly treatment.. it disappears. We have been gradually increasing my trough (lowest allowable) levels of Ig, so that I don't sink as low as I used to. Now I very rarely get internal tremor - but it's always when my Ig levels are lowest - and it always improves with IVIg.

I believe that what I'm experiencing with respect to my internal tremor is a manifestation of endothelial inflammation and non-laminar flow in my blood vessels. Given how much bloodwork I've had, I've heard techs comment often on how my veins "jump" away when poked with a needle. There's smooth muscle lining those blood vessels, and I wonder whether the internal tremor sensation is a result of the non-laminar flow and turbulence causing secondary vibration of blood vessels... or whether the smooth muscle is causing vasospasm and the vessel is actually resonating - like a skipping rope being vibrated up/down at the ends.

An example from the literature:
Consider also that some other opportunistic viruses also cause endothelial inflammation. Here is just one of many articles discussing laminar flow, endothelial inflammation, and viruses. Wouldn't you know it - in this article they discuss a Maloney virus-induced inflammation and "non-laminar blood flow": http://www.jbc.org/content/282/18/13769.full

The vascular endothelium plays a critical role in vascular homeostasis. Inflammatory cytokines and non-laminar blood flow induce endothelial dysfunction and confer a pro-adhesive and pro-thrombotic phenotype... Furthermore, we demonstrate that endothelial Kruppel-like factor 4 is induced by pro-inflammatory stimuli and shear stress. Overexpression of Kruppel-like factor 4 induces expression of multiple anti-inflammatory and anti-thrombotic factors including endothelial nitric-oxide synthase and thrombomodulin, whereas knockdown of Kruppellike factor 4 leads to enhancement of tumor necrosis factor α-induced vascular cell adhesion molecule-1 and tissue factor expression. The functional importance of Kruppel-like factor 4 is verified by demonstrating that Kruppel-like factor 4 expression markedly decreases inflammatory cell adhesion to the endothelial surface and prolongs clotting time under inflammatory states...Factors involved in endothelial homeostasis involve both biochemical and biomechanical stimuli (3-6). Inflammatory cytokines such as tumor necrosis factor α (TNFα)2 and interleukin-1β (IL-1β) cause endothelial dysfunction and induce expression of adhesion molecules such as vascular cell adhesion molecule-1 (VCAM-1) and pro-coagulant factors such as tissue factor (TF) (3, 7). One of the central mediators of most inflammatory stimuli is the transcription factor nuclear factor κB (NF-κΒ) (8). The net effect of NF-κB activation is the disruption of the non-inflammatory, non-thrombogenic endothelial surface. Conversely, laminar shear stress (LSS) induces the expression of various factors including endothelial NOS (eNOS) (9-12) and thrombomodulin (TM) (9, 13) that are essential for regulation of vascular tone and maintenance of a quiescent endothelium.​

Now if some hotshot neurologist/cardiologist/vasculitis expert were sufficiently humble and intellectually curious, they could do a correlational study of internal tremor in ME/CFS patients with physical measures of endothelial inflammation such as the EndoPat (a non-invasive method to measure endothelial integrity). I wouldn't be too blas about internal tremor... I suspect it is a risk factor for thromboembolism, stroke, etc. And they could add Internal Tremor to the list of early warning signs for stroke. Geez, as soon as the research community gets their collective heads out of their butts, they might actually find that ME/CFS is a riveting area for research. Lots of opportunity for research glory. Lots of opportunity for patents, market share, etc.

Where, oh where is a knowledgeable Canadian cardiologist/vasculitis expert?!
Anyhow, that's my instinct of what's happening in my case, and it's certainly supported by my antibody findings and cardiac PCR/immunohistochemistry - and my blessed German cardiology team. Does make some sense, eh? Now if I could just find a competent cardiologist in Canada who understands virally-induced endothelial inflammation, and who "gets" that us ME/CFS'ers are very possibly immune compromised with the XMRV retrovirus, and hence a persistent PVB19 infection is entirely possible. GEEZ! Don'cha hate it when the dog is smarter than the vet? I've gone through so many moronic cardiologists/vasculitis "experts" in Canada, I feel like biting someone.